Sticking points in HIV treatment
‘I tell them, “I have stopped because I don’t have enough food.” Then they say, “You must not stop! […] Eat and take your medicine!”
‘Their thoughts and my thoughts as a user are different, they don’t believe me, they don’t understand me.’
Joseph* is 40 years old and lives with Grace*, his sister, in the city of Tanga, Tanzania. He is HIV-positive and struggles to stick to his antiretroviral therapy (ART) regime. Dominik Mattes, a researcher at the Freie Universität Berlin, shadowed Joseph for 15 months. HIV is prevalent in Tanga and ART has been offered there since 2004. Mattes was interviewing a range of people to gauge the effects of the introduction of ART on the community.
Cultural and financial concerns weigh heavily on Joseph’s mind, as they do for most people, and taking several drugs every day for the rest of his life is an unwanted additional burden. Joseph is currently unemployed, a situation many HIV-positive people can find themselves in after disclosure of their condition. He has fallen out with family members who used to support him, and can barely afford one meal a day. On top of this, the ART heightens his feeling of hunger. “You feel the urge to chew something in order to get rid of the bitterness in your mouth,” he says. But what can he do about it when he has nothing left to eat?
As well as side-effects such as hunger and dizziness, Joseph has experienced social stigmatisation, which is common among the HIV-positive population in Tanzania. Adhering to ART often requires disclosing the condition to friends and family, who may struggle to understand exactly what living with HIV means. Joseph’s sister Grace says: ‘They tell us, using the same kitchen utensils is not infectious but we are afraid and that’s [also] why I don’t wash for him.’
Adhering to ART is not like taking an aspirin a day, it can force you to change your lifestyle, habits and social circles. It is hard, but if patients don’t stick to the medication regime, there’s an increased chance it won’t be effective. In a 2005 WHO report, treatment failure and drug-resistant strains of the virus were found to be more common in those who took less than 95 per cent of their medication. In Tanzania, Joseph’s situation is common among the HIV-positive community, leading to lower levels of adherence and, therefore, less effective treatment.
A different world
In the USA, more than half of all HIV-infected people will be over 50 by 2015, according to a recent Wellcome Trust-funded study by researchers at John Hopkins University, Baltimore. With age comes the increased likelihood of other conditions such as cardiovascular, respiratory and neurological diseases, bringing with them more drugs as treatment.
When a patient is already taking ART, the competing medications can cause serious problems. The action of ART can inhibit enzymes that metabolise drugs commonly used for other diseases and so the chance of drug toxicity increases. Also, poorer ART adherence becomes more likely when a patient is mentally impaired, leading to a decrease in effectiveness of HIV treatment in older patients where this becomes more common.
A better educated and more developed health care system doesn’t eliminate ART adherence issues, and it seems they are only going to become more problematic as people live longer all around the world. In Tanzania, perhaps if patients’ individual thoughts and feelings towards ART were assessed and taken into account, it would be easier for patients to stick to the regimen. In the US, if there were greater awareness among medical professionals on possible drug interactions – and more research into how to avoid them – adherence might also improve. But, of course, such solutions are not simple and require time and money, which are not necessarily available.
ART is not a perfect treatment but it is the best we’ve got for HIV at the moment. It has improved and lengthened the lives of many people throughout the world but difficulties with adherence will continue to undermine its potential in all countries. The question remains: how can we help people who struggle to stick to ART?
*Names have been changed.
adherence in Tanzania:
a pre-intervention perspective. WHO